Nitty Gritty Dirty Grief

There’s a Fire Starting in My Heart

This is not an Easter post.

Or maybe it is. It is about moving on, finding strength to grow from ashes, life after death.

I guess it might be an Easter post.

I have found solace in a couple things; exercise and angry Chick music.

Combine them and I am indestructible.

Yesterday my long ride was thwarted by a snow storm. I was antsy after after a topsyturvey week at work, Jacob’s heart diagnosis, and constant reminders of Samantha.

On Saturday morning, I followed my husband around.

“It’s snowing, should I still go for a ride?”

“Well, it’s snowing,” said hubby.

“Maybe I’ll go to the gym, should I go to the gym? ” I debated back and forth.

“Go!” He said, “Get some of this angst out of you.”

“Am I full of angst?”

“Go”

So I found myself at the gym, at the spin room, by myself in the spin room, a room full of mirrors.

And I plugged in Pandora, an on-line app that plays your favorite songs and then plays other songs that sound similar to your favorite songs.

My Pandora radio station is a plethora of angry-girl music. I love it.

I found myself a sweaty, spin-cycle mess. I burned 1,200 calories in an hour and a half. I was en fuego.

At one time one of favorite songs came on…. Adele… Rolling in the Deep.

There’s a fire starting in my heart,
Reaching a fever pitch and it’s bringing me out the dark
Finally, I can see you crystal clear.
Go ahead and sell me out and-a I’ll lay your ship bare.
See how I leave, with every piece of you
Don’t underestimate the things that I will do.
There’s a fire starting in my heart,
Reaching a fever pitch and it’s bringing me out the dark
The scars of your love, remind me of us.
They keep me thinking that we almost had it all
The scars of your love, they leave me breathless
I can’t help feeling…
We could have had it all..Rolling in the Deep
You had my heart inside… of your hand
And you played it…To the beat

It is a fabulous warrior-goddess song about a bad break-up. Not quite what we have gone through but it hits the inner-pissed-off-Mama-Goddess inside of me.

So I rode. I turned the cycle knob to it’s hardest setting.

I raised up out of my seat and chanted the lyrics

Don’t underestimate the things that I will do….

I wiped the sweat off my brow

The scars of your love, remind me of us.

Someone came into the spin room, looked at my crazy self and left.

There’s a fire starting in my heart.
Reaching a fever and bringing me out of the dark

I could have had it all. What does it mean to have it all? Did I, at one time have it all? Did I play it? To the deep?

I turn the dial one more time.

I think I might throw up….but it’s a good throw up.

Is there a good throw up?

I can’t see through the sweat on my brow.

But I feel my heart. It beats like a crazy drummer. I feel it through my chest and I feel alive. Good heart.

I returned home and fell asleep on the couch at 9:00.

Snooze well warrior princess, sometimes those inner demons are the hardest to battle

Nitty Gritty Dirty Grief

Today’s post is not mine

Today’s post does not come from me.

It’s comes from one of Samantha’s dearest advocates….Sweet Caroline. Caroline is seven (gosh, I think seven, I should know this). Caroline is big sister to Max.

Max and Samantha bonded in pre-school.

As a result, Caroline and Samantha became close.

To make things even more fun, I adore Caroline and Max’s mom, Rebecca.

I miss seeing them at preschool drop-off.

Come to think of it, I miss preschool drop off.

But here is my post, from Mom Rebecca and Caroline. Rebecca was telling me about show and tell and Caroline’s class, ‘Me’ is Rebecca. ‘C’ is Caroline. Baby Samantha is one of Samantha’s baby dolls I gave to Caroline. Caroline named the doll Samantha and takes very, very good care of her.

me: how was show and tell today?

C: great I brought Baby Samantha!

me: what did you tell them about her?

C: I told them the story of the real Samantha, that she got sick near her birthday and she died while we were traveling and how I came up stairs and saw you crying.

me: oh.. you told them I cried?

C: Yes, you cried a lot, but I didn’t tell them how much I cried, is that ok?

me: totally ok.

C: I told them about Miss Heather and how she gave me Baby Samantha and how I kept the lady bug mirror I was going to give Samantha and how I think about her.

me: ah, very good things to share.

C: Let’s go outside and take Baby Sam for a walk

I wrote to Rebecca, saying that it had been a tough week at work. And that as always, Samantha stories touch the deepest, most secretly kept corridors of my heart.

Here was Rebecca’s response

I am glad I could make you smile! I loved talking with Caroline today and was pretty surprised by what she said. I was totally expecting her to tell me that she showed the class how the baby doll cried and how it came with accessories. I had no idea she was going to go into all that detail. I am not sure if I have told you, but the doll is really a baby Sam to her. She sits in the doll wheel chair and she uses a special doll walker for her too.

It is her way to connect with Samantha’s memory, a way for her to still play with Samantha. It was very important to her that she brought the doll into Max’s/Samantha’s classroom today.

I have noticed if she is having a down day that is the first doll she goes to. It seems like a long year doesn’t it? I feel like I have known you forever, but it really was just about this time last year that we really began to get to know each other. I remember how sick Samantha was in April. It was the same time as Max’s MRI and Spinal and when we found out about the Glut 1. I feel like five years have gone by since we got that diagnosis.

Out of the mouths of babes, seriously. I thank God for these sweet stories and these sweet little people who tell it like it is.

Thank you Caroline.

Nitty Gritty Dirty Grief

It’s April

Ah April.

Last year at this time we were in the hospital with Samantha. She had gone off the ketogenic diet because her little pancreas couldn’t handle the fat. It was the first domino in a line of dominoes….one thing after another.

I remember watching her levels rise thinking, how much more can one little body take.

So as another April comes around, I find myself thinking of this time, reflecting on what started a year ago.

I went to hot yoga this evening. I was stiff. My body felt rickety and unbalanced; a bit like my brain. But I did the poses as rivers (seriously rivers) of sweat poured off me.

An hour and a half later, I gratefully left the room feeling cleansed, stinky and as flexible as a slinky.

I couldn’t bear to put my boots back on so I walked into the parking lot barefoot. It was raining and the cool, wet asphalt felt like heaven on my post-hot-yoga tooties. The air smelled of wet earth, beckoning the tulips and pansies to bloom.

On the drive home, I turned the radio off so I could hear the rain falling against the car. I went from rickety and unbalanced to quiet and introspective.

Hello April.

Nitty Gritty Dirty Grief

Until the Cows Come Home

We spent this weekend with friends up in the mountains. It’s a good way to spend the weekend.

The last time we spent the weekend together was last winter with Samantha in tow.

Saturday evening the ‘older’ girls sat in the hot tub drinking wine and watching the sun set over the mountains.

And Samantha came up in the conversation, like she usually does.

“I felt like something has been missing this weekend,” my friend Jill said. “She should be here with us. Bart should be making her do tummy time and she should be protesting. She should be here, wiggling on the floor.”

I smiled. I, like every Mom love talking about my children. I think about her every hour but I love it when someone else thinks about her too. I love it when someone tells me they miss her. It reminds me of what a tiny, force of nature she was.

I looked into the bright, pink sky and smiled at the presence of her that I felt. Even the air smelled like Samantha.

And the the four ‘little’ girls came running out into the hot tub and it was an entirely different conversation…talks about the Little Mermaid, baby sharks and stinky feet.

We soaked until our hands pruned and soaked some more.

I will love Samantha stories forever, until the cows come home, and they leave and then they come home again.

Nitty Gritty Dirty Grief

Kindness….when no one is watching

This week I am a guest blogger for my friend Jenny. She is starting Ben’s Bells in Denver. Check them out! Because kindness counts, especially when you don’t know how much it counts.

We have been the recipients of many, many acts of kindness. As soon as we became a family with a medically fragile child, the kindness came pouring in….meals, notes, prayers, thoughts, the world was with us.

And when we lost Samantha, the world mourned with us.

Today, many continue to help us and we are still overwhelmed by the kindness and generosity of humankind.

But sometimes the little things make an impact.

I have immersed myself back into the corporate world. Not knowing quite what do to with myself and not wanting to be at home, I am back into a high-pressure, travel filled job. It is quite a change.

And I search for specks of kindness in the world of business travelers.

A couple weeks a ago, I was scheduled to fly to Albany via Chicago and I was late.

I was late to leave the office, the highway was peppered with speed traps and the only place to park was 3 bizillion miles away from the airport and I was wearing 4-inch heels.

I cursed my luck and ran (as best I could) to the airport.

I got stuck in security behind a group of 50 students on a Spring Break trip.

I pleaded my case to an unhelpful TSA agent.

I cursed the clock.

Was it arms and legs? No.

Was it life and death? No. But it was still stressful.

I had 30 minutes to make my flight.

I was taken aside for random screening.

I bit my lip.

When I ran down to catch my train, the doors closed before I could get on.

I cursed my luck.

But then the doors opened and I got on the train. And the doors closed…..

And they opened again…. And closed again….

The train was stuck. I would miss my plane.

And I hummed my mantra “It is not life and death…it is only a plane. It is only a plane.”

The man standing next to me said, “the airport is in slow motion today isn’t it?”

“Oh my goodness!!!” I said and unloaded my story. “I am so afraid I will miss my flight to Chicago.”

“Ah, Chicago. That’s where I’m going. We’ll miss it together.”

As the train moved forward, my luck started to change, I might just make this flight. Me and my new friend ran for the plane where we were the last two to board.

He went onto first class and I went onto battle the gate agents as to why I shouldn’t have to check my small, quite compact bag to Albany.

As my new friend left to first class, I said sarcastically, “think of us poor schmucks in 28C.”

I took my ‘check baggage’ tag and headed down towards the airplane. I had made it. But my hair was plastered to my head in sweat, my feet hurt and I questioned the ability to do the smallest of tasks….like catch a plane.

As I went to hand my bag to the gate agent, the flight attendant poked her head out of the plane, “Ma’am? I think we can fit that in first class.”

Oh thank goodness. I stowed my bag and passed my manager…who was also in first class….humph.

“I barely made this flight.” I said, pushed my sweat-coated bangs out of my eyes and made it back to 28C….right next to the lavatory.

Lovely.

But I had made it.

30 minutes into the flight my manager came back to the hovel of 28C. “You haven’t eaten have you?”

Food? Oh yeah. It was 2:00 and I hadn’t eaten all day. “I think I forgot.” I said.

“I’m not going to eat my lunch, would you like it?”

I nodded and my stomach grumbled.

So five minutes later, a disgruntled flight attendant came back to 28C with a full first-class chicken salad, complete with a cloth napkin and real silver ware. I munched on Italian bread sticks with vigor.

A couple minutes later, an even more disgruntled flight attendant came back with a glass of Chardonnay. Apparently, the new friend who I met on the train felt sorry for me and asked to have a glass of wine be brought back to 28C.

Contentment was a meal next to the lavatory.

And that’s kindness is isn’t it?

It’s easy to be kind when we know our neighbor is in crisis. But what about when we don’t know? Who is our neighbor on the flight to Chicago? Are they going to a funeral? To visit a sick friend? Are they a business person trying to put her life together after the death of her child? Or are they just trying to get to Chicago?

Doesn’t matter…. Kindness counts.

Nitty Gritty Dirty Grief

Calling

I am living two lives.

One life gets on a plane, attends conference calls and develops marketing plans.

The other life is focused on our foundation, the world we once lived with Samantha and carrying on the important work she left me to do.

It’s a lot of balls in the air but I am grateful for them in their own way. Work keeps me busy, the foundation gives it all purpose. At least today.

Tuesday after work, I got everything ready for our Wednesday support group meeting. We were having a supply swap which meant going through Samantha’s medical equipment.

We have a lot of it…..

Still….

I pulled out her feeding buttons and thought,

Maybe I should save one just in case.

This made me smirk a little and think for what? It’s those tiny moments that solidify what world we are now in….a world without feeding buttons…and sometimes I feel sad about that.

I went upstairs with a box full of medical supplies and told my husband about my odd desire to keep a button ‘just in case’.

His response was, “Well, I would hope we won’t ever need it!”….which made me smile….hubby…keepin’ it real.

So buttons and syringes were packed in the back of the station wagon and given to another family who could use them….and then I answered a conference call.